Nursey A D, Rohde J R, Farmer R D
Department of Community Medicine, Charing Cross and Westminster School, London, England.
J Ment Defic Res. 1991 Feb;35 ( Pt 1):48-57. doi: 10.1111/j.1365-2788.1991.tb01030.x.
Views about ways of telling parents their child has a mental handicap were collected from a group of parents of children with mental handicaps and a group of doctors with some involvement in this field, using postal questionnaires. Four Likert-type scales were refined covering views about the fullness of information, how early parents should be told, whether parents should be protected from shock and unpleasant information, and who should take a primary role in decision-making. Results indicated that parents were more in favour of being given information about their children's handicaps at an early stage than doctors were, and that they saw themselves as the primary decision-makers in matters to do with their children, whilst doctors were more neutral about this. There were no differences in how parents and doctors felt about the fullness of explanations or about the explicit 'protection' of parents from shock and unpleasant information. The results support the findings of other studies which have stressed parents' wishes to be given as much information as early as possible and to be treated as the people primarily responsible for their child. In addition, a difference between what doctors believe to be the best approach and what parents believe to be the best approach is suggested, and the importance of doctors being given opportunities to learn directly from parents and people with mental handicaps themselves is emphasized.
